Sunday, March 22, 2009

Quiet on a Sunday

Justin is off to church with Addison, and Andrew is sleeping on the couch after a good meal, a change, ANOTHER change because he peed on his shirt, and a new warm blanket. So the house is quiet, literally for the first time since I've been home from the hospital. There is something to be said for noise and chaos. A three year old is the best for that. I haven't had a lot of time to think about our crazy journey in the last year. But when the house is quiet and I have a second to sit and eat brownie batter out of a bowl and reflect, I end up with time to go over it in my head.

Today, I'm missing Thomas. I received a letter in the mail two days ago about a memorial for stillborn babies that the hospital is doing, and it sent me in a tailspin. I think it's hard for people to understand missing someone you've never met. When I was pregnant and in the hospital, I read that the loss of a baby isn't just the loss of a baby; its the loss of a life, of all of the things you had planned for that baby - for the child, and for the adult that he'll never be. While most people will throw out the idea that I'll see him once again, I can't help but be sad and wonder, "But what about NOW?" I look at Andrew and constantly see two of him. His brother was identical, and in a way it makes it just a little harder - to know what Thomas would look like throughout his life. While in the NICU, I had to wear a bracelet that proclaimed me as the mother of "Baby A", a constant reminder that there was once a "Baby B" as well.

My aunt Debbie, who some of you know about, was a big help to me while I was in the hospital. She has had two children born with a rare syndrome that very basically causes them to be born with only half of a heart. Because of this, they've both had severe health problems. They've both received heart transplants and dealt with much more than any child should have to. I received an e-mail from her halfway through my ordeal, and posted this little story with it:

Most women become mothers by accident, some by choice, a few by social pressures
and a couple by habit.
This year nearly 100,000 women will become mothers of special needs children.
Did you ever wonder how these women are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation
with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger:

"Armstrong, Beth: son. Patron saint Matthew
Forest, Marjorie: daughter. Patron saint, Cecilia
Rutledge, Carrie: twins patron saint - gave her Gerard. He's used to profanity"

Finally, he passed a name to an angel and smiles, "give her a special needs child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly. Could I give a special needs child a mother who doesn't know laughter?
That would be cruel."

"But does she have patience?"

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wears off, she'll handle it.
I watched her today. She has the sense of self and independence so rare,
and so necessary in a mother.
You see, the child I'm going to give her, has his own world. She has to make it live in her world,
and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "no matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods, "if she can't separate herself from the child occasionally, she'll never survive.
Yes, here is a woman who I will bless with a child less than perfect.
She doesn't realize it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says "Momma" for the first time, she will witness a miracle and know it.
When she describes a tree or a sunset to her child, she will see it as few people ever see my creations.
I will permit her to see clearly the things I see - ignorance, cruelty, prejudice,
and allow her to rise above them.
She will never be alone. I will be at her side every minute of everyday of her life,
because she is doing my work as surely as he is here by my side."

"And what about her patron saint" asks the angel.

His pen poised in mid air ................

God smiles. " a mirror will suffice."

Of course, when she sent me this, I immediately burst into tears and thought "Thanks a lot, Debbie." But over the months, I've read it countless times. Mostly the part about everything being a miracle. Not only will Andrew always be considered a miracle child, overcoming the obstacles that he did to come join our family, but my Thomas was a miracle baby too. He was alive for as long as he could be, working with his brother to make him stronger. He helped bond our family together through his life and death, and he has taught me things about myself that I never knew.

When Thomas was born, a bereavement specialist came and brought us footprints she had made from his tiny feet, as well as his hospital bracelet, his hat, a blanket and a few other things in a small box. Here are his little footprints in their actual size.

So while I have a lot of moments where I can't help but feel sad for losing Thomas, I also have twice as many moments where I feel grateful that I had him at all. The entire experience has changed our lives completely.

Justin and Addison will be home soon, and then Andrew will wake up, the quiet of the house will be gone, and I'll be focused on peanut butter sandwiches and pacifiers. But I wanted to write a little about Thomas before that happened. I'll still never know why he was sent to me in the way that he was, at the time that he was. But he was very much meant to be my son.


Lisa S. Luckey said...

That is so sweet. I've been following your story and have felt a certain awe that you and your family have been through. I'm so glad Andrew made it here safely and am sorry Thomas didn't. I can feel the love you have for them and wish you all the best.


Luis and Kim said...

That was beautiful. I am in tears!

Chavah Kinloch said...

Such a beautiful post. Brought me to tears. Thinking of you and your family.

Manda said...

I think you're amazing Jae. I love you.

Beth said...

That was just beautiful. Thank you for sharing your story with us (and your fashion advice).

All three of your children are blessed to have you as their mommy

Leah said...

That was so emotional...brought me to tears...what a strong person you are! All three of your children are so lucky to have you as their mother. I know that Thomas will always be with you and looking over his family always! Love you!

Deb said...

Dear Jae -

I've only recently found this blog and I finally got caught up on your story. Your words for your son Thomas moved me greatly. I lost my daughter at 20 weeks about seven years ago. Not a day goes by that I don't think of her. Still.

How lucky Addison and Andrew are. And how lucky you are - to have them and Thomas, too.

Anonymous said...

Oh Jae, you made me cry. I'm so lucky to know you :) You're such a great mama...

Natasha (despite having my own blog now, apparently I can't remember my password to sign in)

Beth said...

Came here from your post on the stillborn thread at BBC. As the mother of a special needs child, I've got tears in my eyes from reading this. I've taken the liberty of copying it to my own blog, so that I have my own reminder of God's company as I journey! I hope you don't mind.

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